INSIGHT on the Issues
AARP Public Policy Institute
Family Caregivers Providing Complex Chronic Care
to Their Spouses
Susan C. Reinhard
AARP Public Policy Institute
Carol Levine and Sarah Samis
United Hospital Fund
Produced by the AARP Public Policy Institute and the United Hospital Fund with support
from The John A. Hartford Foundation
Family caregiving today is largely considered to be an issue affecting mainly
adult children and their parents. This focus reflects the demographics of an
aging population, but it misses a significant group—spouses who are caregivers.
A recent national survey of family caregivers of adults conducted by the AARP
Public Policy Institute and the United Hospital Fund found that 1 in 5 family
caregivers is a spouse.
Spousal caregivers are particularly vulnerable because they are older, have
lower educational levels and less income, and are less likely to be employed
than nonspousal caregivers. Spousal caregivers are more likely than nonspousal
caregivers to provide assistance with medical/nursing tasks such as medication
management and wound care. Yet they are less likely to receive support from
family and friends and are far less likely to have home visits from health care
professionals and aides. Efforts to reduce isolation and stress, as well as targeted
training and support, are needed to protect the health and well-being of both
partners.
All family caregivers are alike in some
fundamental ways. They are committed
to providing or managing the care of
someone close to them, and they need
training and support from health care and
social service professionals, as well as
others in their families and communities.
Older spousal caregivers may have
fewer competing responsibilities than
spousal caregivers with young or teenage
children at home. But this apparent
advantage is often offset by financial,
health, and other limitations and by the
stresses of constant caregiving.
Methodology
This Insight on the Issues takes a closer
look at spousal caregivers who perform
complex medical/nursing tasks. It
compares data on spouses and nonspouses
who participated in the December 2011
AARP Public Policy Institute (AARP
PPI)–United Hospital Fund (UHF)
survey, reported in Home Alone: Family
Caregivers Providing Complex Chronic
Care.1 That survey of family caregivers
of adults asked all respondents about their
responsibility for activities of daily living
(ADLs), instrumental activities of daily
Family Caregivers Providing Complex Chronic Care to Their Spouses
■■ Nearly
living (IADLs), and medical/nursing
tasks such as medication management
and wound care. For some questions
that focused only on family caregivers
providing medical/nursing tasks, this
paper highlights comparisons between
spouses and nonspouses. The full Home
Alone report and methodology can be
found at http://www.aarp.org
/homealone and at http://www.uhfnyc
.org/publications/880853.
one-half (45 percent) had
only a high school education or
less, compared to 38 percent of
nonspousal caregivers.
■■ Less than one-third (32 percent) were
employed, compared to more than
one-half (51 percent) of nonspousal
caregivers.
■■ More than one-half (56 percent)
had incomes less than $50,000,
compared to 46 percent of nonspousal
caregivers, and only 13 per­cent had
incomes greater than $100,000,
compared to 21 percent of nonspousal
caregivers.
A companion AARP PPI/UHF Insight on
the Issues, comparing employed and not
employed caregivers in the Home Alone
survey, is available at http://www
.aarp.org/home-family/caregiving/info
-11-2013/employed-family-caregivers
-providing-complex-chronic-care-AARP
-ppi-health.html and http://www.uhfnyc
.org/publications/880949.
Both spouses and nonspouses tended to
be long-term caregivers. One-half (49
percent) of spousal caregivers had been
providing care for 3 or more years, as
had 43 percent of nonspousal caregivers.
Of long-term caregivers, 29 percent
of spousal caregivers and 23 percent
of nonspousal caregivers had been
providing care for more than 5 years.
Do Spousal Caregivers Face
Greater Challenges?
Of the 1,677 family caregivers of adults
whom AARP PPI/UHF surveyed, 20
percent (336) identified themselves as
spouses or partners. The survey did not
distinguish between those who described
themselves as spouses or as partners; in
this Insight on the Issues, we refer to all
as “spousal caregivers.”
How Do Care Recipients Differ?
Consistent with the typical media
portrayal, nonspousal caregivers were
likely to be caring for a woman—
most likely a mother or grandmother.
However, among spouses, the pattern
was different; 51 percent of the spousal
care recipients were male, compared
to 31 percent of the nonspousal care
recipients.
Table 1 presents some demographic
comparisons between all spousal and
all nonspousal caregivers, 81 percent
of whom were an adult child or other
relative. One-half of spousal caregivers
were women, compared to 60 percent
of nonspousal caregivers. One-half (49
percent) of spousal caregivers were
over age 65, compared to 20 percent
of nonspousal caregivers. Spousal
caregivers were a full decade older than
nonspousal caregivers—median age of
64 compared to 54.
Spousal care recipients were more
than a decade younger (median age
65) than nonspousal care recipients
(median age 78). They were, as might
be expected, about the same age as
their caregivers. Only 12 percent of
spousal care recipients were age 80 or
older, compared to almost one-half (47
percent) of nonspousal care recipients.
Spousal caregivers had fewer resources
to draw on for support:
Nearly all (98 percent) of the spouses
lived in the same household.
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Family Caregivers Providing Complex Chronic Care to Their Spouses
Table 1
Characteristics of Spouse and Nonspouse Family Caregivers (percent)
Spouse
N = 336
Nonspouse
N = 1,339
Gender
Male
Female
50
50
40
60
Age
18–34
35–49
50–64
65–79
80+
Mean
Median
6
13
32
40
9
62
64
18
21
42
19
1
51
54
Race
White
Black
Hispanic
Other
Education
< High school
High school
Some college
Bachelor’s
degree or
higher
82
6
7
4
71
11
3
14
8
37
31
9
29
31
25
Spouse
N = 336
Nonspouse
N = 1,339
Employment Status
Employed
32
Unemployed
68
Household Income
<$25,000
22
$25,000–
$49,000
34
$50,000–
$74,000
20
$75,000–
$99,000
11
$100,000–
$124,000
6
≥ $125,000
7
51
49
23
23
19
13
9
12
Relationship with Care Recipient
47
Child
0
34
Other relative
0
Spouse or
0
partner
100
Friend or
19
neighbor
0
Period of Time Providing Care
< 1 year
31
1–2 years
19
3–5 years
20
> 5 years
29
32
32
25
20
23
Note: Two people did not respond to the survey question about the relationship between the caregiver and the care recipient.
There were differences, however, in
the rates of cognitive and sensory
conditions. Spousal caregivers reported
that their care recipients had lower
incidences of cognitive issues (19 per­
cent versus 33 percent for nonspousal
care recipients), as well as fewer hearing
and vision problems (14 percent versus
21 percent). One explanation for this
difference may be that because spousal
Overall, spouses and nonspouses were
caring for persons with similar patterns
of serious chronic illness and disability.
The most common physical health
conditions were stroke and hypertension,
musculoskeletal diseases (such as arthritis),
heart disease, diabetes, cancer, and lung
disease. Reported rates of depression and
mental illness among care recipients were
also similar.
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Family Caregivers Providing Complex Chronic Care to Their Spouses
care recipients were younger than those
receiving care from nonspouses, they
had not yet developed serious problems
in these areas. However, spousal
caregivers may have been less attuned to
changes in cognitive status and sensory
deficits because they spent so much
time with the care recipient, whereas
most nonspousal caregivers (77 percent)
did not live with their family member.
Also, spousal caregivers may have
been relunctant to acknowledge these
changes.
nursing tasks—compared to 27 percent
of nonspousal caregivers.
Figure 1 summarizes the categories
of medical/nursing tasks and shows
that spouses and nonspouses were
performing specific medical/nursing
tasks at similar rates. Regardless of
relationship status, 8 of 10 family
caregivers who provided assistance with
medical/nursing tasks were helping with
medications, which included injections.
Four of 10 were helping with assistive
devices for mobility and special diet.
More than one-third were helping with
wound care, including pressure sores,
colostomies, and postsurgical wounds.
What Types of Care Do Spouses
Provide?
Home Alone documented that the family
caregiver’s job description was much
more complex than researchers and
practitioners had acknowledged for
decades. We expected to see family
caregivers reporting their help with
ADLs, such as bathing, dressing, eating,
moving from bed to chair, or going to the
toilet. We also expected they would report
helping with IADLs, such as shopping,
managing personal finances, arranging
for outside services, or providing
transportation. But we documented that
almost one-half (46 per­cent) of family
caregivers performed complex medical/
nursing tasks that were traditionally
conducted by highly skilled professionals
only in hospitals or rehabilitation
facilities. These medical/nursing tasks
are not captured in conventional family
caregiving measures. Our findings shed
light on largely hidden responsibilities
and provided a much more complete job
description for family caregivers.
What Medical/Nursing Tasks Do
Spouses Find Difficult?
Some medical/nursing tasks are more
difficult than others, according to
the family caregiver respondents.
But spousal and nonspousal family
caregivers gave similar answers when
asked which two tasks they found the
most difficult. Table 2 summarizes the
findings.
Spouses and Complex Medication
Management
Although medications are a major and
common issue for all family caregivers,
medications may be more complicated
for spousal caregivers. More spousal
care recipients took five or more
medications (73 percent compared
to 60 percent of nonspousal care
recipients) and required nonpill forms
of drugs (e.g., injections, inhalers, eye
and ear drops, and infusion pumps)
than did nonspousal care recipients
(39 percent versus 26 percent). In
addition, managing medications was
time consuming: 73 percent of spouses
who said that medication management
was one of their two most difficult
medical/nursing tasks performed this
Strikingly, spousal caregivers were much
more likely to be performing medical/
nursing tasks; 65 percent performed
medical/nursing tasks compared to
42 percent of nonspousal caregivers.
Nearly one-half (43 percent) of spousal
caregivers performed all three types
of care—ADLs, IADLs, and medical/
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Family Caregivers Providing Complex Chronic Care to Their Spouses
Figure 1
Percentage of Family Caregivers Performing Medical/Nursing Tasks,
for Spouses and Nonspouses
Manage medications, including IV use and injections
Help with assistive devices for mobility, like canes or walkers
Prepare food for special diets
Do wound care (bandages, ointments, prescription
drugs for skin care or to treat pressure sores or
postsurgical wounds) and ostomy care
Use meters/monitors (thermometer, glucometer, stethoscope,
weight scales, blood pressure monitors, oxygen saturation
monitors), administer test kits, use telehealth equipment
Use incontinence equipment, supplies, administer enemas
Operate durable medical equipment (hospital beds, lifts,
wheelchairs, scooters, toilet or bath chairs, geri-chairs, for example)
Operate medical equipment
(mechanical ventilators, oxygen, tube feeding equipment,
home dialysis equipment, suctioning equipment)
Other
Nonspouse
0
Spouse
10
20
30
40
50
60
70
Percent
Spouses (N = 217) and Nonspouses (N = 559)
task at least daily, compared to 48
percent of nonspousal caregivers.
preparation to manage these difficult
tasks.
When family caregivers, both spouses
and nonspouses, were asked who
prepared them to manage medications,
about 6 of 10 (61 percent) caregivers
who found this task challenging
reported learning how to perform at
least some of this task on their own.
However, some of these caregivers
also indicated that they had some
instruction from other sources, most
commonly a doctor’s office or other
outpatient setting (37 percent of spousal
caregivers and 30 percent of nonspousal
caregivers). This finding demonstrates
family caregivers’ striking lack of
Health Care Service Use
Because spousal and nonspousal care
recipients had comparable health
conditions, similar use of acute health
care services might be expected. Both
spousal and nonspousal care recipients
had similar emergency department
and hospital use. Sixty percent of
spousal care recipients had at least
one emergency department visit in
the previous year, as did 64 percent of
nonspousal care recipients. More than
one-half (54 percent of spouses and
57 percent of nonspouses) reported
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80
Family Caregivers Providing Complex Chronic Care to Their Spouses
Table 2
Medical/Nursing Tasks That Spouse and Nonspouse Family Caregivers Find Difficult
Spouse
Percentage
Number
Who Reported
Performing
Task as
Task
Difficult
Use incontinence
equipment, supplies,
administer enemas
Do wound care
(bandages, ointments,
prescription drugs
for skin care or to
treat pressure sores or
postsurgical wounds) and
ostomy care
Manage medications,
including IV use and
injections
Prepare food for special
diets
Operate medical
equipment (mechanical
ventilators, oxygen,
tube feeding equipment,
home dialysis equipment,
suctioning equipment)
Help with assistive
devices for mobility, like
canes or walkers
Use meters/monitors
(thermometer,
glucometer, stethoscope,
weight scales, blood
pressure monitors,
oxygen saturation
monitors), administer
test kits, use telehealth
equipment
Operate durable medical
equipment (hospital
beds, lifts, wheelchairs,
scooters, toilet or bath
chairs, geri-chairs, for
example)
Nonspouse
Percentage
Number
Who Reported
Performing
Task as
Task
Difficult
49
71
144
66
87
62
188
68
168
62
438
61
90
59
229
51
28
39
83
52
85
40
249
38
63
32
182
43
40
38
122
35
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Family Caregivers Providing Complex Chronic Care to Their Spouses
that the care recipient had at least one
hospital stay in the previous year.
Providing Complex Chronic Care
Is a Stressor and Often Not a
Choice
Spousal care recipients, however, visited
more health care providers on a regular
basis: 20 percent (one in five) saw four or
more professionals compared to 12 per­
cent of nonspousal care recipients.
Spousal caregivers were less likely than
nonspousal caregivers to perceive that
they had a choice in taking on difficult
medical/nursing tasks: 70 percent
reported feeling that they had no choice,
compared to 52 percent of nonspousal
caregivers. Spouses were far less likely
to report pressure from other family
members (4 percent compared to
18 percent for nonspouses). These
results again suggest that spousal
caregivers might be more disposed to
shoulder their responsibilities alone and
not easily ask for help.
Lack of Help at Home
In general, all family caregivers
reported that care recipients received
very few home visits from health care
professionals. Spouses fared worse
than nonspouses: 84 percent of spousal
care recipients received no home visits,
compared to 65 percent of nonspousal
care recipients.
Despite the differences in age and
caregiving situation, in general spousal
and nonspousal caregivers reported
similar levels of stress and strain.
For example, 47 percent of spouses
reported feeling that they had no time
for themselves, as did 50 percent of
nonspouses. About one-third of both
groups reported fair or poor health, and
44 percent of spouses and 39 percent of
nonspouses reported feeling depressed
in the past 2 weeks. However, 49 percent
of spouses felt stressed between care and
other responsibilities, whereas 57 per­cent
of nonspouses felt this effect. As noted
earlier, nonspouses were more likely to
be employed, which may be contributing
to this stress.
Nor did these spousal caregivers receive
much help from family or friends or
home care aides: more than one-half
(58 percent) of the spouses reported no
additional help from others, compared
to one in five (20 percent) of nonspouses
who lacked any additional help at home.
Sixty percent of nonspouses reported
that they had help from another family
member, whereas only 28 percent of
spouses reported this kind of assistance.
Similarly, nonspouses were also more
likely to have a home care aide (22 per­
cent) than were spouses (7 percent).
Not surprisingly, given the lack of
external support, more than one-half
(53 percent) of spousal caregivers were
the primary care coordinators compared
to one-third (33 percent) of nonspousal
caregivers.
Spousal caregivers were more likely
to report negative effects for their care
recipient. This may be a result of the
spousal caregiver living with the care
recipient and being involved in daily
caregiving. More than one-third (35 per­
cent) reported that their caregiving
was a constant reminder of illness
for their care recipient, compared to
20 percent of nonspousal caregivers.
Spousal caregivers were twice as likely
(17 percent) as nonspousal caregivers
(8 percent) to report that their caregiving
The reasons that spousal caregivers
received so much less help than did
nonspousal caregivers are unknown. The
spouses may have chosen to provide care
alone, or others’ may have assumed that
no outside help was needed. This issue
needs further exploration because the
lack of outside help is likely to increase
caregiver isolation and stress.
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Family Caregivers Providing Complex Chronic Care to Their Spouses
Table 3
Effects on Spousal Caregivers by Number of Tasks and Chronic Conditions
Spouse
Spouse Caregivers Only
Number of Chronic
Number of Tasks
Conditions
5+
1–2
3–4
5+
0–1
2–4
Variable
Yes
No
Negative Impact
Employment
12%
15%
8%*
Stress of talking to
many
21%
24%
15%**
Worry about
making mistakes
20%
18%
14%**
Constantly
watching
38%*
29%*
26%**
Fair/poor health
33%
31%
35%
Depressed in last 2
weeks
44%
39%
36%**
Sometimes to Always (% of respondents)
Feel have no time
for self
47%
50%
38%**
Feel stressed
between care
and other
responsibilities
49%
57%
38%**
Feel strained
29%
36%
25%
Feel uncertain
38%
38%
34%
11%*
26%*
5%*
15%*
20%*
17%**
40%**
10%*
24%*
33%*
12%**
47%**
8%**
27%**
25%**
36%**
26%
72%**
42%
22%**
23%*
41%**
36%*
63%**
45%*
39%**
67%**
35%**
42%**
65%**
45%**
72%**
23%**
53%**
80%**
53%**
28%
36%
65%**
40%
47%
34%**
10%**
21%**
54%**
33%**
40%**
65%**
55%**
63%**
* Statistically significant differences between groups, at p < 0.05.
** Statistically significant differences between groups, at p < 0.01.
five or more tasks reported feeling
that they had no time for themselves,
whereas 38 percent of those who did
one or two tasks felt the same. The same
pattern prevailed in terms of number of
conditions: 80 percent of spouses who
cared for someone with five or more
conditions reported having no time for
themselves, compared to 23 percent of
those caring for someone with one or
two conditions.
limited their spouses’ activity because
of medication side effects or treatment
schedule. And more spousal caregivers
(20 percent) reported that the medical/
nursing tasks they performed involved
pain, discomfort, and embarrassment for
the care recipient than did nonspousal
caregivers (14 percent).
Both positive and negative effects on
spousal and nonspousal caregivers
increased as the number of tasks and
chronic conditions increased. Table 3
shows that nearly three-fourths
(72 per­cent) of the spouses performing
Spousal caregivers were less likely
(41 percent) than nonspousal caregivers
(55 percent) to report that their
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Family Caregivers Providing Complex Chronic Care to Their Spouses
Finally, what can be done to build a
family and community support network
that respects the preferences and values
of spouses, but offers them the training
and assistance that they need to maintain
the caregiving situation? One spouse
may be ill, but both are at risk.
caregiving avoided nursing home
placement. Spouses may have been less
likely to entertain that option in the first
place, which would contribute to a lower
rate of effect. However, the percentage
reporting that they felt that they were
keeping a spouse out of a nursing home
increased with the number of tasks;
70 percent of spousal caregivers who
performed five or more tasks gave this
response, compared to 23 percent of
spousal caregivers who performed one or
two tasks. This pattern was also true for
spouses caring for spouses with multiple
chronic conditions: 60 percent of spousal
caregivers whose spouse had five or
more chronic conditions reported that
their caregiving helped avoid nursing
home placement, compared to 22 percent
of those caring for spouses with fewer
chronic conditions.
Policy makers should proactively
consider spousal family caregivers in
developing new models of care that
focus on chronic care coordination and
transitions between care settings. They
should not assume that spouses have
the knowledge, skills, and resources
to perform all tasks. Spouses may
know their partner, but they are not
trained to be nurses or social workers.
Development, funding, and execution
of innovative care and coordination
models should have a strong, explicit
focus on supporting family caregivers
who are assuming ever more complex
responsibilities. And spousal caregivers
need special attention, not assumptions
that they are somehow better prepared to
do the job.
Spouses and Caregiving
Spouses taking care of one another
during illness seems a natural part
of an intimate relationship. This
analysis suggests that spouses are in
fact assuming this responsibility over
long periods of time and with little or
no help from professionals or other
family members. Yet “taking care of
one another” in an era of complicated
medication regimens, wound care, and
tasks associated with complex chronic
care is a challenge that no one should
have to face alone.
Acknowledgments
The authors gratefully thank The John
A. Hartford Foundation and the AARP
Foundation for their generous support
of this project. This report is part of a
larger initiative, Professional Partners
Supporting Family Caregivers, which
seeks a better understanding of what
family caregivers are expected to do and
how health care professionals can better
support them in their work. We thank
Amy Berman, senior program officer at
The John A. Hartford Foundation, for
her thoughtful and consistent support of
this project.
Much more attention needs to be paid
to spousal caregivers. Why are they
“home alone”? Is it choice? Lack of
awareness of sources of help? Finances?
Fear of losing independence? A
better understanding of how spousal
relationships in caregiving differ
from those of adult children or other
family relationships would help tailor
interventions that support but do not
supplant the primary bond.
The authors wish to thank David Gould
and Deborah Halper of the United
Hospital Fund for their substantive
contributions to this paper and Miles
Finley for editorial assistance. We
are also grateful to Jordan Green, Ari
9
Family Caregivers Providing Complex Chronic Care to Their Spouses
the ongoing partnership between the
AARP Public Policy Institute and the
United Hospital Fund.
Houser, Lynn Feinberg, and Rita Choula
of the AARP Public Policy Institute for
their assistance and support throughout
Endnote
1
Susan C. Reinhard, Carol Levine, and Sarah Samis, Home Alone: Family Caregivers Providing
Complex Chronic Care (Washington, DC: AARP Public Policy Institute, 2012).
Insight on the Issues 91, April 2014
Written by Susan C. Reinhard, Carol Levine,
and Sarah Samis
AARP Public Policy Institute
601 E Street, NW, Washington, DC 20049
www.aarp.org/ppi
202-434-3890, [email protected]
© 2014, AARP.
Reprinting with permission only.
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